Moving forward

Yesterday we had another potential hiccup brought to light: it is possible there was some nerve damage done during one or both surgeries. The doctors aren't certain that's what is going on as the evidence popped up after some med changes. The good news is that, med change or nerve problem, both are resolvable; though there are no guarantees if it is related to nerve injury.

What alarmed us? Well, Sutton got very mad yesterday and developed a 'two-face' appearance. Like, Batman style. The left side of his face turned very red and sweaty (this is normal for him) and the right side of his face stayed cool and had normal skin coloration with a slightly droopy eyelid - with a very precise line right down the middle of his face. The discoloration is still visible today, though it is very faint, and when he is more awake he can open his eyes symmetrically. Just like many other things we are watching and waiting. 

Today we have had some big strides. When plastic surgery came around we asked if it would be okay to sit him up in bed for a little bit. She cleared us, so he sat up for a few minutes! He is incredibly weak and has head control similar to a newborn, but it helped him get some new positioning (which has been very limited due to the tissue flap) and move a lot of the secretions out. 

Afterwards we positioned him as best we could "sitting" in bed and turned on a movie. For those of you that know us well, you know we haven't had cable in years and watching TV is a very rare occasion in our home. That being said, our kids love the special treat of being able to watch a video. After repositioning and turning on a movie, Sutton has been downright happy for the first time since June 16. He waved, happily kicked his legs and even gave his daddy a little smile. There is finally a little light at the end of the tunnel. Even though we know there may be more challenging days that lay ahead I think there is finally a little grain of hope and excitement that normalcy, or some version of it, isn't too far down the road. 

Also, he seems to be regaining some strength in his vocal cords. This will really be our hold up when it comes to eating by mouth again because if the cords are not functioning well they can't protect his airway and he could easily swallow food or drink into his lungs. We aren't naive enough to think the strength in the right vocal cord will develop rapidly after a year of little to no movement or that the left one can learn to compensate fully in a few days, but his tiny dinosaur noises (as we lovingly refer to them) are getting stronger. At this point his cry is just slightly above the sound of a whisper, so we've got a ways to go, but he is progressing. 

Overall, we'd call the last two days a win. Cheers to many more days on this side of his recovery!

Extubation

The physicians determined this morning that Sutton still has function of his left vocal cord, though the right is questionable. The right cord has been compressed for the past year due to the hygroma, so it may take more time for function to return on that side. This is another watch and wait item on our list. However, since he had decent function of his left side still, they opted for extubation. He came back from the OR about 10:30 a.m. and had already been extubated about 45 minutes while the physicians observed him.

He was a bit wild when he came back because all of his sedation and pain meds had to be replaced last night with something that would allow them to see if he could breathe on his own while keeping him sedated. Unfortunately, it is a medication that can only be used safely for the short term (less than 24 hours) and it wears off very quickly once they stop it. There is a happy medium now, with Sutton returning to many of his previous medications, but at much lower doses. He is opening his eyes now and is significantly less agitated. He has a lot of secretions that he is trying to get rid of, but they seem to be clearing relatively quickly.

Today has gone as well as we could have possibly hoped. Thank you for praying with us for his healing! We hope he continues along this path for the remainder of his stay.

Plastic surgery came in today to look at the exterior tissue flap and all is continuing to go well there, too. She even said he is progressing faster than she anticipated. We are very happy with his outcomes overall at this juncture and we hope he continues to impress all of us with his progress.

"The LORD has done great things for us, and we are filled with joy." Psalm 126:3

The next step on the road to recovery

Last night and today have been very challenging for pain control and sedation. Sutton has built up a tolerance to many of the medications we are using because he has a history with using them in the NICU and because of the high doses he has required during this stay in order to achieve any level of comfort. We did finally achieve a good balance after doctors changed the dosing of certain meds and added new ones. Unfortunately, the levels of medication he is requiring make this a (very) short term solution.

Some of the problems we are running into include maintaining the integrity of the graft in his esophagus as well as the tissue flap on the exterior that allows visualization of whether the tissue internally is holding up. Sutton flails about in the bed when he is not well sedated and the movement at his neck could damage these things. It seems some of what he flails about for is pain, but the majority seems to be agitation. After much discussion it was decided some of the agitation could be the result of being intubated. There are inherent risks with remaining intubated if he can be extubated, but if he can't be cooperative then he would need to be sedated in order to protect the graft. And he can't be sedated using the levels of drugs we are currently using without being intubated. We have a catch 22.

The current consensus seems to be that he return to the OR tomorrow to attempt extubation in a controlled environment. They want to visualize his vocal cords because, if they are not moving sufficiently, then extubation will fail. If they are not moving well the doctors will reintubate with a nasotracheal tube (through his nose) instead of the endotracheal tube (through his mouth) in an attempt to reduce agitation and also allow for some of his pre-hospitalization self soothing mechanisms to be utilized (pacifier). This will allow more time for the vocal cords to heal and then they can attempt extubation next week when he goes back to the OR to remove the tissue flap.

Plastic surgery is tentatively looking at next Wednesday for removal of the tissue flap. If he becomes too rambunctious before then and it is no longer safe to have the flap, it will be removed. This would not hurt the integrity of the internal graft, it would just mean that visualization for how well it is healing would be lost.

Today he started a new respiratory treatment and the IPV was discontinued. The new treatment uses vibration through a small tube on the outside of his chest to help keep his lungs in good working order and help cough up secretions. He still doesn't like this treatment much (though he doesn't like much of anything these days) but he is more tolerant of it than he was of the IPV.

I think we are very hopeful for tomorrow. Even if he can't be extubated (which is a very sensitive issue for us due to the psychological trauma of his initial, failed extubation in the NICU) we are hopeful that he will be less agitated with a nasotracheal tube and that a decrease in sedation will allow us to interact with him more. As of right now we just sit at his bedside. He is so highly sensitive that we do not touch him or talk above a whisper unless we are having to hold him down until the next round of boluses kick in.

That has probably been the hardest part for me this time around and I'm sure it hasn't been easy for Kedric either. I can't calm my child in any way and when he tries to express to me that he is in pain or angry, the only thing I can do is hold him down (so he doesn't damage the graft) and pray that this round of boluses will work. I would love to not have to spend the next week like this, for him and for us, so please pray for well functioning vocal cords and a smooth extubation or, at the very least, less agitation for Sutton.

Happy 1st birthday Sutton!

We celebrated last week before surgery because we knew we would be in the hospital on his birthday. Now, with him being unable to eat by mouth for an unspecified time frame we are very thankful we had the forethought to do that. Because HE. LOVED. CAKE. 

We're celebrating as best we can under the circumstances, in the hope that next year will look better and brighter. We're hoping he'll be able to spend his next birthday extubated as this year and last year he's had no such luck. Here are some of the decorations, gifts and balloons:

And these are his favorite gifts (from the doctors and nurses):

Last night went well and his pain has been well controlled. The tissue remains sufficiently vascularized, so the plan continues to move forward. 

This is a sucky first birthday for a kid, no doubt, but we have high hopes that they will only get better from here! 

Thanks to all of our family and friends who have offered support through kind and encouraging words, spent time with us at the hospital, brought us yummy food, taken care of Cohen and maintained our home. We appreciate all of your continued efforts to make this experience as minimally stressful as possible. God has blessed us with some really wonderful people. 

All done!

Sutton has been recovered in the PICU and he is looking good. They will maintain him on blood thinners to try and prevent any damage to the revascularized area and he will be given a paralytic with his other sedation and pain killers to prevent tension on the sutures in his esophagus that come with certain movements. 

A recap of surgery: Everything went as well as the physicians could have hoped for. The tissue from his jejunum revascularized very well. He has a small out pouch of tissue on his neck to help them visualize the blood flow and know if the tissue internally is holding up. This will likely be removed in 7-10 days once they are confident the tissue has begun to grow in well with the esophagus and maintains a sufficient blood supply. He has 2 drains in his neck and an NG tube to help the air escape in his abdomen. 

Sometimes you do not get to see the silver lining to your struggles and sometimes you get to see it, but it's very far down the road. And sometimes, you get to see it a week later when the surgeons repair damage done in a previous surgery. When they entered his intestines to retrieve the piece of the jejunum they were going to use, they found a small pouch in his intestines that was priming him for a bowel obstruction. So, they removed that. What if the damage had not been done? What if they had been able to repair his esophagus without utilizing tissue from somewhere else? We would not have known about that and he would have had (potentially serious) issues down the road. 

We're very pleased with the success of today's surgery, but there is still some uneasiness about how the tissue will hold up. It revascularized as well as they could have hoped, but that is not a guarantee that the graft will be successful. We are cautiously optimistic. There was also a small area in the esophagus that they could not suture because they felt more damage would be done trying to get to that region than leaving it unstitched. Our prayers continue to be in gratitude for the safety of our child, but we are also praying that the tissue graft will be successful and that the unstitched area will heal well without incident. Just as it was last week we are also watching for infection. 

Thank you for your continued prayers as Sutton moves through the healing process. 

"So do not fear, for I am with you; do not be dismayed, for I am your God. I will strengthen you and help you; I will uphold you with my righteous right hand." Isaiah 41:10

6:05 p.m. update

The surgeon called and they are done suturing the lower end of the graft. Everything looks great and has good blood flow. They will take another look internally to make sure they don't need an extra stitch somewhere. They will start closing up soon. He is ALMOST. DONE. 

5:24 p.m. update

They have just finished suturing the upper portion. It took much longer than anticipated, but everything is still looking great. They took a look at the area from inside as well and the sutured area looks very secure. They had thought attaching the upper portion would be more difficult, so we are not surprised at the length of time it has taken. The general surgery physician has taken over to attach the lower portion. We are so thrilled at the progression today!

3:13 p.m. update

ENT is suturing the upper portion of his esophagus and then surgery will come in and suture the lower portion. His small intestine has been sutured and his belly closed up, they are just working in the neck right now. Keep the good news coming!

1:18 p.m. update

The section of his jejunum has been moved up into his neck and the vasculature attached. Blood flow seems okay right now (happy dance!) so they are moving on to attaching the ends to the esophagus and suturing his small inestines back together. Please pray for continued success with blood flow and the overall success of the surgery. We are very pleased with and thankful for how the surgery is going up to this point. 

10:48 a.m. update

No such luck with reattaching the esophagus. They are moving on to the jejunum. We are disapponted, but knew the likelihood of this being the case. Please pray for success of utilizing his jejunum both in surgery and after. In using another source for the repair, there is the possibility of ending up back in surgery at a later date for many different reasons. We would like to avoid that for Sutton and have the most success possible today for (fingers crossed) his last surgery related to this. 

9:30 a.m. update

Surgery has been underway since about 9:15 a.m. They placed another central line in his groin and started an arterial line in his wrist. They will update again in 1-2 hours. 

He's off...again!

Anesthesia came and got Sutton at about 7:30 a.m. I will update as we get them from the OR. 

Results of the care conference

With more heads put together than I can recall, the care conference helped all of the people tied in with Sutton's case put a game plan together for Monday as well as established several contingency plans. 

Option 1 (and the most ideal option): Pull the lower portion of his esophagus up and attach it to the upper portion. This is not a likely option based on the assessment this past Monday of how much had been removed. However, it is not off the table. There is still a possibility that this will work, and that gives us ample hope that surgery could go the least complex route. While we are extremely realistic about the likelihood that this is the option used, this is the option that we pray for because, the reality is, the person truly in control of all of this can make it possible. We pray for the best possible outcome over the long haul and hopefully that can be reached by suturing his esophagus back together. 

Option 2: If there is simply too large of a gap to span to pull the esophagus back together then they will use a piece of his jejunum (a part of his small intestine). Because there is such a length of intestine, a small piece wouldn't be missed. It also fits better and they can use the incision he already has in his belly from the G button placement to access the jejunum. The downside is that the vasculature can be extremely difficult to use. If the vasculature looks too small and likely to fail, or they use this option and the blood supply isn't sufficient, they will move onto...

Option 3: A segment of his colon. This option would allow them to pull the blood supply up with the segment being used which would obviously give a good probability of long term success. The downsides include that the colon is slightly more difficult to match with the esophagus in terms of size. Also, this option would require an additional incision in his chest and a chest tube - all of which create another thing that could get infected. 

Option 4: Bypass everything and attach his stomach directly to his esophagus. This is a worst-case scenario option. They have this plan in place, but we didn't go into much discussion with this option because the likelihood of making it to this stage is slim. Anatomically, everything is as it should be so there would have to be some major hiccups in order to get here. We have faith that this is the one contingency plan that we won't encounter. 

If they use option 2 or 3 we should know within the week if everything has a sufficient blood supply. He will likely come back from surgery intubated and, when it is time for extubation, the current consensus is that it would be best to take him back to the OR for safety and so that they can take a look at his airway. At some point he will have a swallow study and possibly some other tests to see how the repair is working. We were told there will likely be some leakage after the repair until the scar tissue seals everything off completely, but that is not unexpected and we can deal with that when it happens. 

The bottom line is that any option used will result in him being able to eat by mouth again. However, each option has a different healing rate and the length of time before he would be able to eat by mouth increases as we move through the contingencies. Based on that, we will focus on where we are going to, not what the journey will look like or how long it will be. 

The procedure should take approximately 6-12 hours, with the large variance in time being based on how many options they have to work through. He is supposed to head down to the OR at 7:30, so I would anticipate he will be in surgery within 2 hours of that. I will update the blog as I have information throughout the day. 

As far as his day today, he did not have a fever all day (WOOHOO!). His CO2 was slightly high, so he was given a rate back on his vent to help him blow that off when he exhales. His CO2 has started to come back down within normal limits. His hemoglobin was up today, but still low. We are anticipating a blood transfusion on Sunday to prepare him for surgery (and likely another during and/or after surgery to compensate for blood loss during the procedure). We are still having some challenges with pain control, but nothing too crazy. One of his medications is currently being withheld as a bolus, or intermittent dose, but he is still getting the continual rate. The medication bolus is being withheld due to low blood pressure because it can cause a further decrease in his pressure. After he moved all of the excess fluid off he has had a low pressure so he is getting a fluid bolus, or specified amount - not fluid that will run continuously, to compensate for that. He has other medications that can be bolused for comfort in the mean time. 

I won't lie, I'll be glad when Tuesday is here and, while I don't want to wish away his childhood, I'm looking forward to the normalcy that will hopefully be part of our life by this time next year. But, for now, I'll focus on Monday. 

Patiently waiting

The past two days have been relatively uneventful, something for which we are very thankful. Here is the latest update.

Sutton has been spiking a fever almost once every 24 hours, but it is easily resolved with a little Tylenol. He has had more secretions from his nose and mouth as well. ENT came in this afternoon and we discussed the possibility of infection since we are post-op day 3. It is a valid concern, but the surgical site isn't red or tender and there are no other signs of possible infection. He has been on a broad spectrum antibiotic since surgery, so the consensus is that we watch and wait. Watch and wait is a perfectly acceptable option from our perspective. If he does have an infection, it is possible that he could go into the OR over the weekend to have the site "washed" to keep it as clean and ideal for surgery as possible. We hope that we will not have to enter the next surgery under less than ideal circumstances, so we ask for prayers that we can continue on a reasonable path of recovery from one surgery in preparation for the next.

Tomorrow the physicians from anesthesia, ENT, plastic surgery and pediatric surgery that will be involved on Monday are having a care conference to discuss their game plan for the esophageal repair. I have already mentioned why the other physicians are involved, so I wanted to clear up why plastic surgery is involved. Pediatric plastic surgeons deal with the tiniest parts of a child's vasculature and, if it is necessary to use a segment of his small intestine or colon, then the plastic surgeon will be responsible for making sure the tissue has a sufficient blood supply once it is used to repair the esophagus. There is no exterior physical issue they are trying to correct.

Also, the drain from the surgical site in his neck is not putting out much fluid. Again, the doctors are not immediately concerned, but because of the (for lack of a better word) loose nature in which they closed up his neck so that they could return to surgery, it is possible there is something that is leaking. I am not sure if they are concerned about the areas where they resected the hygroma or the stitched off esophagus, either way prayers for everything to be sufficiently intact would be greatly appreciated.

Sutton seems to be feeling better and we have a firmer grip on his pain control. He is still breath holding when he doesn't like something. His vent settings are now in what they would consider extubation status, where he is doing all of the work himself and getting just enough assistance from the machine so he doesn't feel like he's breathing through a straw (since he is, in fact, breathing through a straw). That is definitely something that was a concern for us going into this based on his poor extubation in the NICU, but based on this run we are hopeful for extubation next week after surgery.

We have also started nutrition for him. They are using his G button now, though what he is receiving is negligible (one ounce over 6 hours). His feeds will not increase until after surgery for his safety, so they are meeting the rest of his nutritional needs through IV nutrition.

He has also finally begun to move some of the fluid off of his body from Monday and he is looking progressively less puffy. They gave him a one time dose of a diuretic to jump start this on Tuesday, but his kidneys were still pretty sleepy from the procedure Monday and only began to kick in to high gear last night. We are hopeful he will continue on this path and return to his normal size before they have to puff him up again.

Because of these fluid shifts/redistribution from surgery and the overall fluids he is taking in through his PICC line on a daily basis, his hemoglobin was down from yesterday. It is not low enough to meet the blood transfusion threshold and he is otherwise asymptomatic (he is not pale, having difficulty breathing, etc.) so we are taking a watch and wait approach here as well. He will have another set of labs drawn in the morning and his team will assess if a transfusion would be appropriate at that time. If his counts don't rise by at least a point or more he will require a transfusion in order to go into surgery.

We thank all of you for the continued prayers and are hopeful for Monday. We realize that what they are working with is not ideal, but it is not impossible either. Please continue to pray for Sutton's continued recovery and health as well as the physician's at the care conference tomorrow as they use each of their individual talents and abilities to best serve our child.

"Let us hold unswervingly to the hope we profess, for He who promised is faithful." -Hebrews 10:23

New plan

Sutton has a lot of secretions due to his esophagus being non functional and his surgery, so respiratory has started something called IPV. It will help force extra air through at periodic intervals to keep his airway and breathing tube clear and healthy and to prevent secretions from pooling and causing infection (pneumonia, for example). Nothing is wrong, this is being used as a preventative measure right now. 

Also, the whole medical team is working very closely as we have still not found the right combination of medications to keep him comfortable. He seems comfortable for the most part, but if anyone touches him he quickly becomes irritated and sometimes holds his breath. This results in his vital signs being all over the map and the nurse having to force breaths in with the vent in order to keep him breathing until he calms down. 

Surgery. It is looking as though the consensus is for repairing his esophagus this coming Monday. They want to allow some of the swelling to go down first and they will need substantial OR time again (probably 6-8 hours) which requires scheduling coordination. 

He has had a PICC line placed and his peripheral IVs removed as well as the arterial line and his catheter. The PICC line will provide a more stable, longer term access for them to infuse medication, sedation and anything else they may need it for related to his daily care and surgery. 

Please pray that they can find a safe, sufficient cocktail to make him comfortable and that the IPV will keep any respiratory concerns at bay. Also, for the discretion of his physicians, nurses and other caregivers as they piece together the best plan of care and work to make him as safe and comfortable as possible. 

Sutton's night

As Sutton weaned off of the anesthesia there were some gaps in pain control, but he seems to be pretty comfortable on a combination of 3 different medications (a pain killer, something to make him sleepy, and something to take the edge off). He has had an elevated heart rate and he spiked a fever last night of 102.3. His fever was taken care of with a little Tylenol and, at this point, the ICU physicians are not overly concerned about possible infection. He is on an antibiotic currently (standard procedure after all of this), however, they will continue to monitor him closely and adjust or add to that as it is necessary. 

No news from ENT or the surgeon as of now. Right now, our plan continues to be to keep him comfortable and figure out when would be the best time to send him back to surgery. 

Surgery is complete

Everything is done. <Sigh of relief>

The pediatric surgeon came out and said it is possible that it may be a better option to repair the esophagus while Sutton is in the hospital. This could mean a very lengthy stay for him in order to provide some healing time prior to the surgeon doing the repair. There are several reasons this is a possibility (his secretions have nowhere to go with his esophagus being sutured shut and right now they have minimal scar tissue to work around), but tonight is not the time to make those decisions. The physicians are mentally, emotionally and physically exhausted; as are we. A good nights sleep will help them look at the case with a fresh pair of eyes. It will also give the pediatric surgeon an opportunity to confer with his colleagues as to what the best route may be.

This will likely be my last update of the night. Once he has been recovered in the PICU we will want to spend our time with Sutton.

Thank you for all of your prayers and encouraging words. We need and appreciate them more now than you will ever know.

9:15 p.m. update

Our primary ENT and the pediatric surgeon have discussed their assessments and the options with us. The area that has been resected is approximately 5 cm and this is too large to attempt to fix at this time. Even under ideal circumstances, we would be looking at another 4-6 hours in surgery in an attempt to repair the esophagus and for an infant that has been under heavy anesthesia for 10 or more hours already, this could open Pandora's box of potential problems.

For now: they will suture off the ends of his esophagus and leave it unattached. They will insert a G button after his neck is closed up and he will receive his nutrition through tube feeds. The pediatric surgeon would like his neck and esophagus to heal for at least 3 months before he attempts to repair the esophagus.

At the time of repair: If it is feasible, he will reattach the ends of Sutton's remaining esophagus. This is the best option, but if it would require too far of a stretch, he will likely take a different route. Stretching the esophagus to reattach it would only cause greater problems down the road with stenosis (narrowing) and issues choking. If that is not a feasible option, the missing area can be replaced with part of the small intestine or colon. It is not the best option, since that is not what God intended those parts to be used for, but it works in a pinch. He would be able to eat, drink and grow like a normal kid.

Pray for our doctors. I'm certain they are physically, mentally and emotionally exhausted. This is not what they hoped for and they are working very diligently for the best possible outcome. Pray for Sutton. Eating is the joy of his life, so we are thankful he will not remember this. Pray for a speedy and otherwise uncomplicated healing process and for his comfort.

We are ready for the sun to rise on tomorrow. A bright, new, hopeful day. And one step closer to a normal way of life for him.

8:32 p.m. update

Both physicians have emerged looking tired and disappointed. They have called in a pediatric surgeon because the issue is not simply a tear in the back of his throat. After much difficulty attempting to repair what they thought was a tear and being unable to get an NG (feeding) tube placed, they realized that the problem was a missing portion of his esophagus. It was too rooted in with the hygroma and they are not certain that the damage will be immediately repairable.

The pediatric surgeon will be here within the next 10 minutes, but we are looking at several more hours in surgery. I didn't even ask about healing time. There are several surgical options, and our ENTs have addressed some of them with us, but they want the surgeon to speak with us after he has seen Sutton.  He may require a G button which is a temporary (can be very short term or could be used for years, if needed) feeding site in the belly that allows for tube feeding.

We are not reassured by the look on the ENTs faces, but Sutton is still stable and it seems they feel more disappointed that they have let us and Sutton down than that something will continue to go wrong. But, we know they have done everything within their abilities to make this as successful as possible and we continue to trust in their discretion as we move forward. Please pray for a successful evaluation and repair for Sutton. That kid will be more disappointed by an inability to eat by mouth than anything else.

Please also pray for no additional setbacks. We sure are tired.

7:30 p.m. update

They are having difficulty repairing the tear in his throat. We expected he would be moving up to the unit about now, but we will continue to wait as the doctors work diligently to suture his throat. Sutton is stable. 

6:10 p.m. update

And a visit from the doctor. The hygroma is out and there were a few minor issues during the procedure. 

First, there was a mucous plug in Sutton's breathing tube. An infants breathing tube is very small, so it doesn't take much to block off the tube (and, therefore, their ability to breathe). That halted the procedure for a little while while that issue was resolved. 

Secondly, because the hygroma was so deeply rooted into the surrounding areas, when the doctors tried to remove it from the back of the throat his throat tore. They are repairing the torn area and he will require some extra healing time. We are looking more towards a 2 week stay now. He will have a feeding tube placed and as the area heals they will do a swallow study to ensure he is not aspirating before they allow him to eat again. He will also get some extra antibiotics as a preventative. They also had to remove half of his thyroid gland because they could not detach it from the hygroma. She isn't certain that his parathyroid gland (which regulates calcium) wasn't removed as well. She suspects it is behind the remaining portion of his thyroid, but we will know for sure in a few days based on his lab results. The thyroid can still be functional with only half of it, but if there are any issues with either his thyroid or parathyroid we will begin working with an endocrinologist. 

I'd be lying if I said we weren't a little disappointed by the outcome, but overall we are very happy with the results. It wasn't the best case scenario, but it was far from the worst. The nerves and vessels were not touched at all (though he could still have voice trouble because the general area was disturbed and nerves are very sensitive; time will tell) which is great. 

Please continue to keep him in your prayers as these next several days can determine a lot of things for him. We are hoping for no endocrine issues and successful healing of his throat with no infection and no aspiration problems. We are also praying for a successful extubation (we don't care about the timeline, we just want it to be successful) and the strength of his airway. 

3:00 p.m. update

"For lack of a better word, the mass is rather...stuck. Everything is fine, and he's doing great, it's just slow going." We asked if they felt like we might be at the halfway point. His ENT said yes, but that is all dependent on how long it takes her to remove the remaining mass as she moves down through the hygroma. Keep on truckin'!

1:30 p.m. update

"Sutton's vital signs are stable and they are continuing with the resection. We'll call back with an update in an hour or two." 

Super! (That's genuine, I'd much rather have quick, no news reports, than the alternative). Thanks for the continued prayers. 

12:10 update

The OR nurse called and said all is going well. They made the incision at 11:23 a.m. His ENT is currently at the hygroma and has just begun to resect it. It took a while to get started as they needed to intubate him, start different IV lines (one for anesthesia, one for fluids and medication, and one for blood transfusions) and start an arterial line to monitor his blood pressure and blood gases the most accurately. 

He's off!

Sutton was taken back to the OR at 10:20. The expectation is for the procedure to take 8 hours and for him to be transferred to the PICU still intubated. We will post updates as we have them. Thank you for all the prayers, please keep them coming! 

Memorial day fun

Tandem haircuts

Hillbilly Cohen

Water fun

A walk in the park

Creative imaginations

Cohen's 3rd birthday